I would probably need to start with saying that the extreme type of psychological conditioning that is WD, has made me more and more, at times to the point of automatism, switch the thoughts from what I don’t have into what I do have, or its sub-type; what more I do have comparing to what I less had months or years ago, and that the “glass-filling” will continue.

In 2010 when the SS-like symptoms had been gone for 2 years and everything else was very slowly improving it was easy to do what you describe above. I was guardedly optimistic even excited at times about the prospect of recovery. But now that the SS-like symptoms have been back for more than two years and I am in such discomfort it's really hard to see it this way. 80% of the time it's just feels like endless suffering. I can still see modest improvement in my non-episodic symptoms but it's just so hard to see the glass as half full when there is so much minute by minute suffering (confusion, severe muscle discomfort, agitation, etc).

Another thing that helped me was finding something worth living for, “creating” something. For me it would be contributing all I can to this our place here. And, even with my “calcified pineal gland”, lol, (and despite it sounding a bit lofty) I can feel to what extent it is, in fact, a spiritual fight for all of us.


My "something" is cycling.... I have intense interest in it and love it when I can do it but lately exercise has been causing confusion, etc. This is a problem that I've had for 15 years so it seems I may be left with a passion that I can't pursue... Thank you for all of the good work you do here. You are very thoughtful and knowledgeable about withdrawal and living with chronic illness. Keep up the good work.

This last paragraph ties in well with what you wrote, Mike; “I've been putting off living until I am well vs just giving it a go while I am sick”. I SO get it. Here’s how I see it; what helps in my case, is compensating my lack of “living on the outside” (isolation going on in my “real”/more physical life, inability to do things considered so everyday by most of the “healthy ones”) by “living on the inside” as much as possible. And doing it until the next and next stages of recovery are reached. This “living on the inside” I imagine for many of us as exploring the highest floors of the Maslow’s Pyramid, or even adding more levels to it (WD forces us to do it).

I do this for hours and hours a day reading cycling journals. It's very enjoyable but I have to wonder what the point is if I am never going to able to do what I want within cycling. It's not looking so good after 12+ years of illness, 15 years of exercise reactions, etc. I guess it's time to turn to other things, reading, writing, meditation...

At the same time though, trying things out is a way to go, too. You wrote, “On a good day I might push myself a little more and take small risks, small experiments”. I feel the exact same. For a long long time, when, b/c of my “explorative” actions, I brought about a darn wave, I blamed myself terribly. But, as the improvement kept happening, even if so slowly, plus I managed to learn more and more about the dynamics of WD, there’s less and less of the blame these days. In One Flew Over the Cuckoo’s Nest, there’s this scene, in which the main character McMurphy, after having lost the bet about his being able to lift this heavy hydrotherapy console, says to others “But I tried goddamnit. At least I did that.”

I agree with all of the above.

No need to reply to any of this. I am stepping away for a while but will check in down the line.

Thanks again,

-Mike